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With ME, usually the best approach to sleep is be like a cat and sleep whenever you feel like it. Most of us have no jobs and rarely leave the house, so it's often practical. I have non-24, so my sleep cycle is about 25-26 instead of 24 hours long, and I sleep 10-12 hours a day. While my sleep...

Why is the medical community still ignoring long COVID? https://thehill.com/opinion/healthcare/4011212-why-is-the-medical-community-still-ignoring-long-covid/ By someone who got ME in 2017. Extensively discusses how doctors ignored PEM and that they need to pay attention to it.

You need good-quality headphones or large speakers to reproduce frequencies that low. Worse, your display needs to run at at least 80Hz to reproduce a 40Hz flicker. It takes 1/40 s to display both white and black, so it's white at one point and black 1/80 seconds later. Also, videos and...

They don't rent the whole building. From https://fortune.com/2021/10/04/instacart-ceo-fidji-simo-womens-health-startup-metrodora-institute/

Seems like quackery. There's many forms of magnesium with high solubility in water and thus high bioavailability.

Publishing negative results is absolutely essential for scientific progress.

They opened last month:

Metrodora clinic, which the Instacart CEO announced founding a while back, is now open and taking patients. They specialize in a wide range of conditions, including ME/CFS, long Covid, POTS, connective tissue disorders, and IBS. Almost all of them share a common thread: They're poorly understood...

There's a deep unfairness to the terms medical harm. My best guess is that the author means it's a health problem that is either measurable or might kill you. Thus, inability to take care of yourself, work, or have fun aren't counted. Symptoms whose causative pathophysiology is not known don't...

This is blatantly obvious. I would extend that by saying people in racial/ethnic minorities are treated with disrespect or given inadequate care frequently, and that this needs to be changed immediately.

Biggest problems with the article: ME claimed to be extreme tiredness. No mention of differentiating symptoms like PEM Says to talk to your doctor if you might have ME, without mentioning likelihood of being discriminated against Implies ME causes extreme sleepiness Mentions correlated with...

I've been to Cleveland Clinic where every single doctor believed I had a medical problem. They seriously suggested I might have an autoimmune or metabolic disorder. I've received many obscure tests, including for rare autoimmune diseases. I'm getting neuropsychiatric testing next week and a...

I hope we don't have mice running around our server.

Thank you so much from those of us without the cognition or time to read entire posts.

As someone who has tics, the very idea of them being "functional" is blithely absurd.

I read Stephen's Twitter thread on it. I don't see how this hypothesis is any more compelling than the metabolic trap, or any other hypothesis. Prusty is convinced but researchers are often overconfident in their discoveries. I will watch how this develops. Perhaps his paper will be compelling...

Here's the online version: UK’s first Long Covid clinic treating Brits left needing specialist care https://www.mirror.co.uk/news/health/devastating-toll-long-covid-revealed-29949418

And it's a JPEG! Ewww

That's heavily suspicious. Perhaps they stopped using the actimeters because they realized it wouldn't show any actual improvement. Or maybe there's a more innocent explanation, but the purpose of sticking to your methodology is to stay above suspicion of such shenanigans.

This is among the best works on very severe ME, depicting its tragic nature in frank language with sharp brevity. The most striking aspect of this thread is how he writes about her almost as if she has died. The world needs to understand how incapacitating ME is, and the enormous burden it...